🌿 Chapter 4 - The Long Middle

This is the part nobody warns you about.

Not the diagnosis.

Not the end.

But the long, stretching middle.

The routines became my life:

dispensing her medication
meal planning, shopping and cooking
coping with her repeated questions
understanding her changing moods - and mine
planning and learning

I had to learn that I needed 'my' time. I had to find a way I could leave her alone safely. Friends and family gave me respite and hour or two at a time. Thanks very much to all of them.

For me the hardest part was the endless thinking about what to do next. What is best for her. And is that best for me? Is there some other medication that might help? Is my mental strength sufficient to cope - and is there help available? Should I be thinking about physical aids in our apartment? Can friends and family help - and if so, how?

It was during this phase that I started planning ahead.

Without making any commitment, we both agreed that one particular one care home was our favourite.

But how to fund it if ever she needed this type of care. Fortunately she didn't make that move but navigating that was a minefield. I found it impossible to find out what the council might contribute and what we would have to add.

It was during this period that we started an endless cycle of going to the GP to explain the evolving scenario. Our GP would only allocate 10 minute slots and these appointments would invariably end up with the promise of a referral to a consultant, but of course there would be a time lag of weeks or months. Invariably the result of a consultation would be, in summary, 'She has dementia and there is nothing we can do.'

Jackie took well to going to dementia cafes regularly.

I joined a group of 12 carers all looking after someone with dementia. No two situations were the same but there were lots of helpful ideas. It was so useful that our group still meets up regularly as a support group independent of MIND who set it up.

This was when I realised that my journey was significantly different to theirs. Jackie wasn't forgetting who any of our family and friends were. She only went wandering the once. She was losing weight and struggled to form words, but her longer term memory didn't seem to be majorly affected. She lost the ability to write. Then couldn't speak. But there was no bad behaviour. No regression into a child like state.

Back to the GP. was it some other form of dementia. No one, including specialists at Kings Hospital in London could confirm this, but my research found a subset of Frontotemporal Dementia where the symptoms described matched Jackie. Based on that identification the GP decided to stop a medication that was potentially harmful.

How frustrating was this. I was becoming much more aware of current research and thinking about dementia than the GP.

It was a marathon without a finish line.

There were moments of humour—Jackie could still be wonderfully funny even deep into her illness.

She was still in charge.

There were moments of heartbreak—simple tasks becoming impossible.

There were moments of exhaustion—physical, emotional, existential.

This stage lasted years.

If you are living in the Long Middle now:

you are doing far more than you realise.

And you are stronger than you feel.

Next: Chapter 5 - When Things Got Harder

Previous: Chapter 3 - What We Did Next